A Lack of Senses in a Newborn


Before asking the jury in the Castillo-DuPont case to watch the footage of Johnny Castillo – a day-in-the-life video that showed how difficult it was for him as a child born eyeless – I wanted them to hear from Donna what it was like to suddenly be faced with raising a child with no eyes.

 

She began by talking about the first two years of his development, years that were quite different from what a typical newborn or infant would experience. As a totally blind baby, Johnny lay very still. He didn’t know any world other than darkness. All his learning came through listening to sounds. With no visual contact, there can be no visual response.

 

When Donna or Juan looked at their son, he could not look back. When they smiled at him, he could not return the smile. He didn’t twine his fingers, what experts call midline fingers, or even move one hand to touch the other because he wasn’t aware he had fingers or hands. Blind babies don’t realize they have extensions to their bodies.

 

To connect with her son, Donna spent a great deal of time massaging and caressing him with lotions and creams and teaching him how to move his hands, clap them together, and open and close them; to clutch a rattle and to pick up his foot and bring it toward his mouth, as babies do; and to roll over, as well as reach all the other typical physical milestones an infant experiences.

 

To accomplish this, she would make sounds that Johnny could recognize, in order to guide him. Donna and Juan encouraged their son’s movement through music and other aural clues they thought might inspire him. If blind babies aren’t motivated or stimulated to move, it can result in serious developmental delays. Lying down in one position for too long can also cause infants to have a very flatly shaped head.

 

During the first 3½ years of Johnny’s life, he couldn’t sleep the whole night through. Sometimes he’d be awake all night long. Totally blind children are often unable to produce enough serotonin to sleep all night. For them, it’s as if they are in a constant state of jet lag. There were many times when Johnny would awaken at 3 a.m., go without a nap during the day, and still not be able to fall asleep until nine or ten at night. Since he wasn’t active like other children, it made sleeping very hard.

 

The family tried to do things to encourage some physical activity. They would tie a jump rope around his waist and run with him or use a hula hoop to get him to move around, but these were all assisted activities, meaning Donna and Juan were never without their son in tow.

 

In my next post, I continue to recount the efforts of Donna and Juan Castillo to help the development of their blind infant son.

 

You’ll find more details, as well as a full narrative of the preparations for the case and the trial itself, in my book Blindsided, from which this post is adapted.

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